Chronic Back Pain for Years

Posted by jlfisher56 @jlfisher56, May 2, 2017

6 back surgeries (extensive cervical and lumbar fusions) with neurological complications. Left with chronic pain. Accident happened in Nursing career 1992 and worked with first fusions until 1999 (failed fusions). At my age, and as a former nurse educator, I never wanted to had to rely on medication/s for the severe pain. Having thoroughly exhausted exploring sites using non-pharmaceutical methods, using psychological methods, biofeedback, trying to accept my limitations, i.e., I still believe somewhere…out there…is hope. The strong medicine has caused gastroparesis, further complicating my health problems. They are too numerous to write and I will not focus on them. I am looking for “help” and guidance. If I can be of assistance to anyone throughout their trials, (perhaps similar to some of what I have gone through), I will.

@thm946

I have been using Tramadol for 3 + years for disc pain in my low back. Was taking it before bedtime & had trouble falling asleep. Mentioned this to my GP about sleep problem. He informed that Tramadol is a sedative medicine & a stimulant is added to prevent drowsyness. Now I only take it in the AM or early afternoon. For me it’s a very effective pain reliever.

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Thanks for that info — I didn't know why I could take 1/2 of a Tramadol and it would kill the pain without making me sleepy like other prescription pain relievers do … I'm so glad they added the stimulant so we can take it during the day. Peggy

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I have been using Tramadol for 3 + years for disc pain in my low back. Was taking it before bedtime & had trouble falling asleep. Mentioned this to my GP about sleep problem. He informed that Tramadol is a sedative medicine & a stimulant is added to prevent drowsyness. Now I only take it in the AM or early afternoon. For me it’s a very effective pain reliever.

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@thm946

I have been using Tramadol for 3 + years for disc pain in my low back. Was taking it before bedtime & had trouble falling asleep. Mentioned this to my GP about sleep problem. He informed that Tramadol is a sedative medicine & a stimulant is added to prevent drowsyness. Now I only take it in the AM or early afternoon. For me it’s a very effective pain reliever.

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Hi, @thm946 – sorry to hear about the ongoing disc pain in your low back. I've merged your post here so that you can interact with many others in this discussion who have talked about back pain, like @grandmar @2011panc @oregongirl @eileena @lioness and others.

Glad to hear the tramadol has been a very effective pain reliever. Thanks for your tip about taking it in the morning or early afternoon, due to the stimulant added to prevent drowsiness, so that you can fall asleep at bedtime.

Will you share a bit more about your low back disc pain and how it first arose?

Liked by lioness, barbarn

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@oldkarl

@living_strong Telling you something that I have found important. I, too, have a faith base, and religious practice has been a big part of my life. Done many things with these 78.5 years. Pastor, truck driver, computer programmer, Real Estate loan and grant manager, football player, coach and official, teacher, restaurant bus boy, mechanic, professional student, seminar leader, etc. But I found my answer to my own disease, Hereditary Gelsolin Amyloidosis, in what I learned to do. I take care of the details of my health as best I can. After visiting 60-70 MDs, I started writing up my own story, which anyone can get free at httpjs://bit.Ly/1w7j4j8 under "Amyloid and Old Karl". But it was at that point I realized that the doctors I was seeing never looked at any of my records from their own labs. Mayo, OHSU, … any of them. So I started searching by going back and re-reading my old lab reports, writing down summaries of them, and doing a lot of thinking about what was happening in my life. And I found some sources of terrific material. I bought "Amyloidosis – Diagnosis and Treatment" by the Mayo- Rochester staff, bought it from Amazon as an E-book. And a bunch of other stuff I got free from Helsinki University Hospital, and NIH and other places. As I went along I found a few kernels here and there, and put them in an orderly stack. And guess what? Because there are so many forms of Amyloidosis, I may not have the final exact diagnosis identified, but I know in my gut I am very, very close. And I know a heck of a lot more about what is wrong in my body than do most of the doctors I see. Medicare will not accept my diagnosis, but they were not accepting the others, anyway. Now, I do not expect that I know what your body is doing, but in many ways it sounds like mine. But you might look at my stuff and see if you can get some ideas. And, as a next resort, try the NIH Undiagnosed Disease program. All you need is a doctor whom you trust and will actually write a letter to them to get you into the program. I just lost a Clinical Trial I needed because my doctor was too lazy to write a letter saying only "I suspect Karl has Amyloidosis." )*&^%^$

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@oldkarl @grandmar

Update:

It turns out that the majority of my pain was contributed for being deficient in vitamin D. I have taken 25,000 UIs for a few months due to the level of 22. The optimal level should be 75 according to the medical professional I visited. I also had to supplement with a normal daily dose of magnesium and potassium because vitamin D can deplete these minerals. If magnesium or potassium become deficient then the side effect is similar to low vitamin D. I wish that doctors would be willing to check vitamins and mineral levels before conducting other expensive tests and surgeries. This only causes the patients stress with medical bills and live in pain longer. It would have been wonderful to avoid the surgeries and significantly decrease (getting more pain free days now) my pain levels.

There has been several people who I have shared my story. They started vitamin D and were tested. They too are seeing results to a better life with less pain, fatigue, exhaustion, and other improvements. One has rheumatoid arthritis amongst other issues. She had a level of 6 as a test result. Of course she will see an improvements due to the level. I am curious if some of the things she has been diagnosed with are actually misdiagnosis since her nutrition (vitamin) levels were only tested because she requested it.

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Are you familiar with the pain pump? Mine has been a great success. Pain still stops me from walking any significant distance without a cane or a walker but at least when I'm seated or lying down I am not in pain. I've had this in since 2016 and I get it refilled every 10 weeks. Anything beyond 10 weeks and the medication gets old and becomes ineffective. Medication administered from the pump through a cervical catheter is 300 times more effective than medication taken by mouth

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No I’m not what kind of doctor can help me with this

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@vklittle61

No I’m not what kind of doctor can help me with this

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I see a doctor Park who is a neurosurgeon and I see him at mhealth in Minneapolis Minnesota. I failed you at the pain clinic at M health. After along evaluation in intake seeing the number of specialists it was decided that the pain pump was better for me than an implanted stimulator in my spine. I had surgery, was in the hospital for two days when they put in the pump every of the catheter up my spine. I did not experience any post-surgical pain.

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I'd like to also join this conversation, please. I have had a variety of surgeries on my neck and spine, and have tried everything imaginable to help with the continued pain. I'm due to try injections, which I am sure is an approach to take before another surgery is done on my spine and neck. But I notice that after each surgery, after time, another disc seems to "go." I'm frustrated and need to find an alternative that may bring relief. I'd like to follow this conversation and seek out experts that have similar issues/concerns. Thank you.

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Happy weekend all!
It's been a bit of time since I've written. I'm starting a new phase of my back issues. For those of you who are new or just as a reminder, I've suffered from back pain for years and years. I've gone the shot route, acupuncture, chiropractor, etc. Then one year ago I have 2 cervical discs replaced. It was a quick recovery and all my symptoms were gone (pain, numbness and weakening of arms, hands and fingers). In June 2018 I noticed that the toes on my right foot were not moving up and down, I could not move my foot right to left and both my legs and fee were weak, all in addition to the pain in my back and legs. I had lumbar surgery about 4 months ago. I had an XLift Fusion on L4/5. Horrible, long, painful recovery! BUT….for the first time in years and years pain is gone. I still have osteoarthritis pain all over and fibro, but the other pains are GONE.
Now, my weaknesses in my legs, feet and toes are being investigated. I have no pain, but I fall, need a cane or walker to walk and neuropathy is getting worse and increasing in my left side, too. I've had a lumbar MRI. So far, we know I have more stenosis and the nerves in my back are still very inflamed and they are clumping together. We don't know the cause of either.
On the advice of my neurosurgeon, I went to see a neurologist. It was hard to find a good one in Central Florida, but with research I finally found one. She found that my fingers, toes and mouth palette quiver. I knew about my hands. My mom, son and cousin have that, too. She has ordered an EEG of my legs, even though I already had one. So the fun begins again. I am currently on Prednisone to try to bring down the inflammation. But it looks like I might possibly need more surgery.
Fun, Fun, Fun!
I'll keep you up to date on my journey!
Enjoy your weekend!!!
Ronnie (GRANDMAr)

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@iteachgate

I'd like to also join this conversation, please. I have had a variety of surgeries on my neck and spine, and have tried everything imaginable to help with the continued pain. I'm due to try injections, which I am sure is an approach to take before another surgery is done on my spine and neck. But I notice that after each surgery, after time, another disc seems to "go." I'm frustrated and need to find an alternative that may bring relief. I'd like to follow this conversation and seek out experts that have similar issues/concerns. Thank you.

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@iteachgate
Hi!
I feel your frustration! I was told when I first found out I needed surgery, that IF I had a fusion, there would be a good possibility that more disc surgery would need to be done. Simplified, as I understand it, the weight of the fusion can impact the discs above and below, warranting another surgery. It can be a viscous cycle. For me, shots, etc. were not working, that's why the surgery.
What I have learned during this process…..there is NO one fix!
Good luck!
Ronnie (GRANDMAr)

Liked by lioness

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@grandmar

Happy weekend all!
It's been a bit of time since I've written. I'm starting a new phase of my back issues. For those of you who are new or just as a reminder, I've suffered from back pain for years and years. I've gone the shot route, acupuncture, chiropractor, etc. Then one year ago I have 2 cervical discs replaced. It was a quick recovery and all my symptoms were gone (pain, numbness and weakening of arms, hands and fingers). In June 2018 I noticed that the toes on my right foot were not moving up and down, I could not move my foot right to left and both my legs and fee were weak, all in addition to the pain in my back and legs. I had lumbar surgery about 4 months ago. I had an XLift Fusion on L4/5. Horrible, long, painful recovery! BUT….for the first time in years and years pain is gone. I still have osteoarthritis pain all over and fibro, but the other pains are GONE.
Now, my weaknesses in my legs, feet and toes are being investigated. I have no pain, but I fall, need a cane or walker to walk and neuropathy is getting worse and increasing in my left side, too. I've had a lumbar MRI. So far, we know I have more stenosis and the nerves in my back are still very inflamed and they are clumping together. We don't know the cause of either.
On the advice of my neurosurgeon, I went to see a neurologist. It was hard to find a good one in Central Florida, but with research I finally found one. She found that my fingers, toes and mouth palette quiver. I knew about my hands. My mom, son and cousin have that, too. She has ordered an EEG of my legs, even though I already had one. So the fun begins again. I am currently on Prednisone to try to bring down the inflammation. But it looks like I might possibly need more surgery.
Fun, Fun, Fun!
I'll keep you up to date on my journey!
Enjoy your weekend!!!
Ronnie (GRANDMAr)

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I'm so glad that you updated us on your journey, @grandmar. You are really a trooper when it comes to back issues. I realize that you have been through a lot, however, when you listed it all in one post, your journey seems quite remarkable.

I'm hoping that your new doctor will find some help for you. I appreciate the hopefulness that you always exhibit. The way you deal with chronic pain is helpful to us all.

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@hopeful33250

I'm so glad that you updated us on your journey, @grandmar. You are really a trooper when it comes to back issues. I realize that you have been through a lot, however, when you listed it all in one post, your journey seems quite remarkable.

I'm hoping that your new doctor will find some help for you. I appreciate the hopefulness that you always exhibit. The way you deal with chronic pain is helpful to us all.

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Thank you!!

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@iteachgate

I'd like to also join this conversation, please. I have had a variety of surgeries on my neck and spine, and have tried everything imaginable to help with the continued pain. I'm due to try injections, which I am sure is an approach to take before another surgery is done on my spine and neck. But I notice that after each surgery, after time, another disc seems to "go." I'm frustrated and need to find an alternative that may bring relief. I'd like to follow this conversation and seek out experts that have similar issues/concerns. Thank you.

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Hello, @iteachgate, and welcome to Mayo Clinic Connect. Many of our members have found it informative, encouraging and normalizing to follow threads that mirror their health issues, so I'd encourage you to follow this discussion.

You mentioned having surgeries on your neck and spine. Will you share more about what operations you have had thus far? You also mentioned you notice that after each surgery, after time, another disc seems to "go." Hoping that members like @gailb @grandmar @wsh66 @living_strong @pfbacon will have some perspectives to offer on what you've observed here.

Will you be having injections soon? How are you feeling about them?

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@lisalucier

Hello, @iteachgate, and welcome to Mayo Clinic Connect. Many of our members have found it informative, encouraging and normalizing to follow threads that mirror their health issues, so I'd encourage you to follow this discussion.

You mentioned having surgeries on your neck and spine. Will you share more about what operations you have had thus far? You also mentioned you notice that after each surgery, after time, another disc seems to "go." Hoping that members like @gailb @grandmar @wsh66 @living_strong @pfbacon will have some perspectives to offer on what you've observed here.

Will you be having injections soon? How are you feeling about them?

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I have had two surgeries (fusions) in my neck and am fused from
L-3 to S-1. I continue to have nerve pain down my legs though MRI says all looks fine. My doctor believes the disc above my highest fusion is problematic. I always wonder if I retired and had the time to exercise if I would have the pain and problems I am having.
I’m having numbness and pain in my hands and arms and am scheduled for carpal tunnel surgery and then possibly another surgery for the disc above the last surgery in my neck. Nobody can tell if my issue is from my neck, carpal tunnel, or a combination. Probably a combo.

Please note that I do have one of the top five rated surgeons in the US. But it doesn’t change that I’m still in pain and concerned about my health and future years ahead. My pain management doctor is also well trained but I believe it’s something that may work temporarily, if at all. I think it’s a game we play for insurance to approve surgery. I am a teacher and did not have an injury. I was in yeh grocery business, however, for many years and was not gentle with correct lifting. I continue with teaching to be in a constant position where I am lifting, bending, or twisting with 24 3rd graders.
I hope that helps to paint a vision of what I face on a day to day basis. Thank you for your kind response. Lisa

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@iteachgate

I have had two surgeries (fusions) in my neck and am fused from
L-3 to S-1. I continue to have nerve pain down my legs though MRI says all looks fine. My doctor believes the disc above my highest fusion is problematic. I always wonder if I retired and had the time to exercise if I would have the pain and problems I am having.
I’m having numbness and pain in my hands and arms and am scheduled for carpal tunnel surgery and then possibly another surgery for the disc above the last surgery in my neck. Nobody can tell if my issue is from my neck, carpal tunnel, or a combination. Probably a combo.

Please note that I do have one of the top five rated surgeons in the US. But it doesn’t change that I’m still in pain and concerned about my health and future years ahead. My pain management doctor is also well trained but I believe it’s something that may work temporarily, if at all. I think it’s a game we play for insurance to approve surgery. I am a teacher and did not have an injury. I was in yeh grocery business, however, for many years and was not gentle with correct lifting. I continue with teaching to be in a constant position where I am lifting, bending, or twisting with 24 3rd graders.
I hope that helps to paint a vision of what I face on a day to day basis. Thank you for your kind response. Lisa

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@iteachgate, welcome to this chat. I am wondering if you have, but think you must have along the way, had much in the way of therapy for stretching you muscles. The last guy I worked with helped with the Radiculopathy I suffered with. It radiated from C=7/C-8 down my right arm and made me very sick to my stomach. The PT stretched my neck over a period of 6 visits and finally my back muscles were freed up. I had done all I knew and asked for PT and he sure was good at what he did. Have had zero return of that particular problem.

BTW…I can't spell big words unless I verify them, so please just use Phonics to pronounce that big word that means a compressed nerve with radiating pain down the arm.

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